Turner Syndrome Challenges

Your parents probably thought a lot about your life expectancy when you were first diagnosed, until they understood that women with Turner’s live just as long as those without. Today they may talk with each other and with you about possible learning disabilities, such as a nonverbal learning disability (NLD), associated with Turner Syndrome. If you’re an adolescent girl with Turner’s, however, the things you are most likely to care about are:

  • boys and dating
  • driving a car
  • how your body looks
  • doing well in school and/or going to college some day
  • making and keeping good friends.

All the things mentioned on that list are the same things other girls your age care about too! But, you have another list of cares associated with the special challenges that Turner Syndrome imposes.

Most girls with Turner’s have extra health problems. While your life expectancy is normal, you need to be especially careful to eat well, exercise regularly, and take any medications prescribed by your doctor.

Many girls with Turner’s have specific learning disabilities caused by their condition. A nonverbal learning disability, for example, may cause difficulties with math but can mean special abilities in writing and vocabulary development. The same NLD may make it hard for you to read body language, learn visual cues from teachers, and adapt to new situations.

Meeting Challenges: Additional challenges for Turner adolescents.What Parents and Other Adults Can Do

Well, Turner girl, it’s time to talk to your parents. Have a frank discussion with them about what they can do to make you strong, independent, and assertive. If they protect you, thank them, but ask them to help you protect yourself from now on. And do it. Speak up for yourself.

Your parents can teach you to drive. Don’t wait until you get taller; chances are, you won’t get much taller. Use a seat cushion to boost your height so you can see above the steering wheel. Get pedal blocks so you can reach the brake and accelerator.

Make a list of things that girls your age do, and do them. Ask your parents to set a reasonable curfew. Make sure the things you do are appropriate for your age, and not someone younger than you.

If you’re not developing breasts and getting a period, you may need estrogen. Talk this over with your doctor. Ask your Mom, or other woman in your life, questions about sexuality and boys.

If you haven’t been tested for learning disabilities, ask your teacher for a referral. You may be doing great in school, but you may be eligible for special services like a tutor in math. Make sure all your teachers know about any concerns you have with regard to nonverbal learning disability.

With a life expectancy of 80 years, you need to be ready to live a life of quality!

What Adolescent Girls Can Do

  • Work out at a gym with girls your age. Walk, swim, or bike with a friend.
  • Make friends with boys. Join a youth group. Go to a camp. Join a club at school or an online message board. Learn to dance. Invite people to your house. It may be hard to imagine, but everyone else is self-conscious too. Really.
  • If you have difficulty with motor coordination, balance and handwriting, go for activities that challenge you to improve those things, but also select activities that require less coordination. Skiing and swimming are great sports for you.
  • Ask for a computer, both at home and at school. Learn to type. A word processor makes up for a lot of bad handwriting!
  • Be open about your special challenges. Because of NLD, some changes are harder for you. Say, “Hang on a second, Guys. It’s going to take me a little longer to get used to this.”

Resources

Developmental Disabilities Resources for Healthcare Providers. (April 9, 2001) Turner Syndrome. Retrieved November 9, 2001 from http://www.ddhealthinfo.org/ggrc/doc2.asp?ParentID=5197.

Dr. Gerard Conway Adult Turner Clinic. (nd). TS Healthcare. Retrieved November 7, 2001 from http://www.tss.org.uk/.

Hodson, J. (nd). Turner’s Syndrome. Retrieved April 22, 2002 from http://www.mssc.edu/biology/B305/GTS/fs98/turner/turner.htm.

University of Maryland Medicine. (October 10, 2001). Turner’s syndrome. Retrieved November 7, 2001 from http://umm.drkoop.com/dyncon/article.asp?at=